The Leiden Developmental Care Project: Effects of Developmental Care on Behavior and Quality of Life of Very Preterm Infants and Parent and Staff Experiences

148 Pages·2007·1.398 MB·English

by  Sylvia Van Der Pal

This thesis explores S Sylvia M. van der Pal
the effects of a basic form of y
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developmental care (the use of incubator covers and nests) i
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and the more extended Newborn Individualized Develop- v
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mental Care and Assessment Program (NIDCAP) on health n
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related quality of life and behavior of very preterm infants. e
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The effects on parents’ stress and their experiences with P
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developmental care are also explored. This thesis furthermore · Th Developmental Care
evaluates the attitudes and experiences of the personnel at a
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Dutch neonatal intensive care unit with the NIDCAP program. L
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d Project
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Sylvia van der Pal received her MSc degree in Clinical and n
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Health Psychology at the Leiden University. After graduation,
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she participated in the Leiden Developmental Care Project in e
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o Effects of developmental care
the neonatology department of the Leiden University Medical p
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Center. As of January 2007 she works as a junior researcher e on behavior and quality of life
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for TNO Quality of Life. t
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l of very preterm infants and
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In 2006 Leiden University has initiated a series Leiden Disserta- re parental and staff experiences
tions at Leiden University Press. This series affords an opportunity P
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to those who have recently obtained their doctorate to publish o
j
e
the results of their doctoral research so as to ensure a wide c
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distribution among colleagues and the interested public. The
dissertations will become available both in printed and in digital
versions. Books from this LUP series can be ordered through
www.lup.nl. The large majority of Leiden dissertations from 2005
onwards is available digitally on www.dissertation.leidenuniv.nl.
lup dissertations
9789087 280192
leiden university press
LUP
vdPal_DEF.indd 1 22-2-2007 13:50:06
The Leiden Developmental Care Project:

Effects of developmental care on
behavior and quality of life
of very preterm infants
and parental and staff experiences
Leiden University Press is an imprint of Amsterdam University
Press

The Leiden Developmental Care Project described in this thesis
was financially supported by: ZONMW (grant 2100.0072) and
the Doelmatigheidsfonds LUMC.

Financial support for the publication of this thesis was provided
by: Jurriaanse Stichting, Nycomed B.V. and Abbott B.V.

Cover illustration: István de Koning (Lina Geibreen)
Cover design: Randy Lemaire, Utrecht
Lay-out: István de Koning

isbn 978 90 8728 019 2
nur 870

© Leiden University Press, 2007

All rights reserved. Without limiting the rights under copyright
reserved above, no part of this book may be reproduced, stored in
or introduced into a retrieval system, or transmitted, in any form
or by any means (electronic, mechanical, photocopying,
recording or otherwise) without the written permission of both
the copyright owner and the author of the book.
The Leiden Developmental Care Project:

Effects of developmental care on
behavior and quality of life
of very preterm infants
and parental and staff experiences.

PROEFSCHRIFT

ter verkrijging van
de graad van Doctor aan de Universiteit Leiden,
op gezag van de Rector Magnificus,
prof.mr. P.F. van der Heijden,
volgens besluit van het College voor Promoties
te verdedigen op dinsdag 17 april 2007
klokke 15:00 uur

door

Sylvia Maria van der Pal

geboren te Leidschendam,
in 1980
Promotiecommissie

Promotores: Prof. Dr. F.J. Walther
Prof. Dr. J.M. Wit

Co-promotor: Dr. J. Bruil

Referent: Prof. Dr. S.P. Verloove-Vanhorick

Overige leden: Prof. Dr. A.A. Kaptein
Prof. Dr. I.A. Van Berckelaer-Onnes
Prof. Dr. S. Maes
TABLE OF CONTENTS

Chapter 1 Introduction 1

Chapter 2 Parental experiences during the admission of 13
their very preterm born infant after two
Developmental Care interventions

Chapter 3 Health-Related Quality of Life of very preterm 33
infants at 1 year of age after two Developmental
Care based interventions

Chapter 4 Very preterm infant’s behavior at 1 and 2 years 49
of age and parental stress following basic
Developmental Care

Chapter 5 Parental stress and child behavior and 67
temperament in the first year after the Newborn
Individualized Developmental Care and
Assessment Program (NIDCAP)

Chapter 6 Staff opinions regarding the Newborn 87
Individualized Developmental Care and
Assessment Program (NIDCAP)

Chapter 7 General discussion 109

Summary 127

Samenvatting 133

Dankwoord 139

Curriculum Vitae 141

Introduction

Preterm birth: infants and their parents

Advances in neonatal caregiving have decreased the mortality of infants born
very preterm 1,2. When an infant is born preterm this also has a major long-
lasting impact on both the family and the individual infant. Parents of preterm
infants report more stress 3,4 and experience more maladaptation and need for
support during the first year after delivery 5 than parents of infants born at
term. Furthermore, mothers of high-risk preterm infants have reported that
they experience symptoms of post-traumatic stress 6.

Very preterm infants have lower health-related quality of life (HRQoL)
compared to children born at term 7-10, as reported by their parents, especially
regarding stomach, lungs and eating problems 9. Health-related quality of life
is defined as the functioning of the child on four dimensions (physical
functioning, social functioning, cognitive functioning and emotional
functioning), weighted by the emotional evaluation of the problems 11,12.
Preterm infants also show more problem behavior compared to infants born at
term. A meta-analysis 13 found more externalizing and internalizing problem
behavior in preterm infants in 13 out of 16 studies (81%) and more Attention
Deficit and Hyperactivity Disorder (ADHD) symptom behavior in 10 out of
15 studies (67%).

Parental stress and infant behavior problems are interrelated in which
increased maternal stress and depression at 4 months and parents’ post
traumatic stress reactions were correlated with increased problem behavior at
36 months 14 and increased risk of the child developing sleeping and eating
problems 15.
2
│Chapter 1
The NIDCAP intervention

Because of the advances in neonatal
caregiving and the decrease in the mortality
of infants born preterm 1,2, focus in neonatal
caregiving has shifted to a more
individualized and family-centered approach.
In this context the Newborn Individualized
Developmental Care and Assessment
Program (NIDCAP) 16, introduced by dr.
Heidelise Als in the 1980's, seems very
promising. This program is based on the
Synactive Theory of Development 17 where
the infant’s behavior is observed along four channels of communication: the
autonomic system (skin color, respiration etc.), the motor system (posture,
tone and movements), the state organization system (type and range of states
available to the infant from asleep to aroused and state transition) and the
attention and interaction system (the infant's ability to come to an alert,
attentive state and to utilize this state to handle stimuli from the environment).
The infant’s efforts at self-regulation and interaction are observed through
approach and avoidance behaviors 17,18. The infant’s behavior is observed
before, during and after caregiving by a NIDCAP trained developmental
specialist. A narrative of the observation is written with recommendations to
modify the infant’s environment and caregiving, based on the infant’s
individual behavior. Examples of recommendations are: time-outs during
caregiving when the infant becomes stressed, giving the infant something to
hold on to or to suck on (whatever comforts the infant most) and placing the
caregiver’s hands around the infant’s body to support flexed position and to
provide comforting boundaries (containing). Furthermore, parents are guided
in observing and responding to the infant’s behavioral cues during caregiving
and kangaroo care is encouraged (placing the infant on the parent’s chest to
support bonding and provide the infant with familiar odours, sounds and
warmth). The observations and recommendations are discussed with parents
3